Child and youth experiences and perspectives of cerebral palsy: a qualitative systematic review

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Abstract

Background

Cerebral palsy (CP) is one of the most common causes of physical disability in childhood, and many children with CP access rehabilitation services throughout their lives. The aim of this qualitative systematic review was to synthesize the experiences and perspectives of youth living with CP to inform the development of rehabilitation and social programmes.

Methods

A thematic qualitative synthesis integrating qualitative evidence was undertaken where six electronic databases (MEDLINE, Embase, Healthstar, Cumulative Index to Nursing and Allied Health Literature, Proquest and PsychInfo) were searched from 1980 to September 2014.

Results

Thirty-three articles involving 390 youth, aged from 2 to 25 years, across six countries were included. Themes were classified according to the International Classification of Functioning Child and Youth Version framework. Youth's accounts focused on social inclusion and the physical environment (i.e. services and supports, transportation, accessibility, accommodations, safety and weather), the role of family and peers and participation (i.e. leisure and recreation, school and civic engagement). Youth described how body structure and function (i.e. pain and physical functioning, mental health, fatigue and unpredictability of body function) affected them – often disrupting their biographies. Some youth described personal factors such as independence, coping and body image that affected their ability to cope with their condition. There was much less focus on youth's experiences of mobility, activities of daily living and assistive devices.

Conclusions

Youth with CP experience pain, fatigue and impairments to body function, along with social exclusion, which can affect their biographies. However, youth had strategies to revise their biographies to maintain personal and social normalcy.

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